Living with Antecubital pterygium syndrome
A rare genetic condition with webbing at the inner elbows that limits how the arms can move.
Understanding Antecubital pterygium syndrome
Webbing appears on both elbows, running from the upper arm to the forearm. It comes with bone and muscle differences in the arm and missing skin creases on the finger joints. These can make it hard to fully straighten or turn the arm. It is noticed in newborns and infants.
Signs & symptoms
GARD doesn't list specific symptoms for this condition, but its summary describes these features:
- Skin webbing at the inner elbows, on both sides
- Limited elbow straightening and forearm turning
- Dislocated elbow bone (radial head)
- Missing skin creases over the finger joints
- Missing or small arm muscle and bone parts
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include genetic specialists and skin, hair, and nail specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- Genetic specialists (geneticists); Skin, hair, and nail specialists (dermatologists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Children's Skin Disease Foundation
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
GARD says changes in genes (also called variants) cause this condition. It is autosomal dominant, meaning one changed copy of the gene can be enough to cause it.
Also known as: antecubital pterygium; pterygium cubitale; webbed elbow
Patient organizations
- Children's Skin Disease FoundationSkin diseases · United States
Broader rare-disease groups
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Antecubital pterygium syndrome.
Explore research for Antecubital pterygium syndrome
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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